I am in no way a doctor or medically qualified. Everything that I write in this post is based on my own investigation of several sources as you shouldn’t take anything as being true without researching it yourself.

If I have made a mistake, please let me know so that I can correct it.

So, here goes…

Radiation is given to certain kinds of cancer in order to kill bad cells so that the cancer doesn’t spread or reproduce.

The normal way that radiation is given is using photons. For the layman, it doesn’t really matter what photons or protons are, but just know that they are two different kinds of administering radiation.

Radiation traditionally has really bad side effects because as well as killing bad cells it also kills good cells.

As all parts of the body are made up of cells, if you use radiation on a leg (for example) it is likely that you will not only kill cancer cells but also leg cells which means that there could be a negative effect on the leg.

The main reason why this happen are:

you can only be accurate to a certain level

you kill cells on the journey to the bad cells

radiation kills cells on the exit from the bad cells

radiation radiates so also covers a circumference around the targeted area

This is one of the reasons why you see bad side effects with radiation such as:

hairloss

loss of fertility

stunted growth

nausea

reduced IQ

etc.

Radiation is literally killing you at the same time as it is killing the cancer.

So, this is where protons come in to the picture.

Above we said that traditionally radiotherapy uses photons. However, over the last few years, certain institutions have experimented by using protons instead of photons.

It is still radiation and it is also delivered in a similar way. It also has the same success rate in getting rid of cancer cells.

The difference is, that it (supposedly) is more accurate and therefore kills less surrounding cells.

Which sounds great!

There are a few problems though:

The machines cost around 250 million dollars +. This means that there are that many machines and they are not available in many countries, currently including UK and Israel.

This also means that there is a great interest of the purchasers to ensure that they recoup their investment and there are suggestions that in marketing, the benefits are exaggerated.

The cost to use the machines is high (approx. 10s to 100s of 1000s of dollars) and is often not covered by insurance or takes a long time to be approved. As many patients are under a tight time-frame this means that they don’t have the luxury of waiting for financial approval or sponsorship and also don’t have their own resources to pay for it.

The scientific evidence is sketchy (continued below)

Let me clear up about the scientific evidence. Apart from being aware of who is presenting the evidence, there is also the problem of doing statistically valid testing.

there are not enough cases where it is used on specific tumors in order to get valid results on how it compares to photons

as the technology is fairly new, the long term effects are not known

for ethical reasons, it is almost impossible to do double blind tests and apply placebos etc

Therefore any results must be read in context and taken with a pinch of salt.

In terms of studies I have read, there is one that tested on 70 children and found that there were small improvements compared to photon treatment in:

IQ loss

mortality

hearing loss

Another comparison was done between the success of cases using photons in one hospital against results obtained in another hospital using protons. The improvement with protons was there but negligible.

Once again, there are major problems with both of these studies such as the fact that it is likely that the proton patients were in a ‘better’ hospital to start with as that hospital was able to afford the machine! Perhaps there were other aspects of their care such as diet or less stress that also contributed. And also the placebo effect.

In addition, the cases that were looked at were historical cases so possibly comparing apples with oranges.

It is also likely that there was additional selection criteria with regards to patients who receive protons because of the cost. Whereas most people would be treated with photons when radiation is needed, protons would probably only be used when justified.

So…those are ‘facts’, but I wanted to also speak a bit personally about the situation that I found/find myself in and why I made the decision that I did.

One of the problems that I have is not having the knowledge to make a decision. And seemingly many oncologists were also unwilling to take a stand.

Obviously there was the money issue, but when thinking about using proton treatment I tried to put that aside as you can’t put a value on life and say whether it is worth $5k, $500k or $5m. That would have to be considered when making a final decision, but if you take that into account immediately then it makes the final decision difficult to come to.

The primary issue was whether proton treatment would be measurably better for my son’s survival and side effects. And this was incredibly difficult to find an answer to.

To an extent, the evidence suggests that in general protons are better than photons. But how about when this applies to his specific medical case and age etc.? Very few people if anyone are able to make a judgement call.

Eventually we spoke with a paediatric radiation oncologist who said that the benefit would be that there could be a reduced chance of the cancer reappearing in the body in the future.

For various reasons, in Ro’is case, the other side effects wouldn’t be improved.

So, here was someone who said that proton treatment could be more effective than photon which as a parent is something that you want to hear.

However, there was no number on how reduced that chance would be and difficult to find statistics on how normal it was anyway with photon. And if the unspoken happened 5,10,20,50 years down the line was it the right time now to effectively start dealing with it?

Another decision was with regards to having to go to another country. There are different places around the world, mainly in Europe and America and Canada. I was advised that in Europe Paris was probably the best one to go to.

Going to another country meant leaving the other kids for 10 weeks. Also being apart from my wife for much of that time. Not to mention the financial impact due to loss of wages etc.

It also meant that Ro’i would not be able to continue his rehabilitation treatment from the previous surgery and lack of continuous support from one institution.

And then there was the issue of whether Ro’i was well enough to travel at all.

There is no ‘right’ answer to all of this anything out of many different things could happen in the future that makes our decision the right of the wrong one.

However, my wife and I weighed up that from a health point of view and also taking the rest of our kids into account that it would not be the right decision to go forward with proton treatment.

Before I leave, I want to discuss a bit more about the attraction of proton beam therapy. I will probably go into further detail about this in another post, but as a parent you are looking for every single opportunity to help your child.

This ranges from diets, to other strange cures, to machines…in fact most parents would literally go to the world and back in order to help save the life of their children.

This also means that you are very susceptible to scams as you are so open to trying everything.

As a cynic, I am aware of that and actively avoid anything that smells of it.

However, proton treatment is a medical treatment that is ‘proven’ by science and trusted by doctors. This is what makes it really attractive. I found that I desperately wanted it to be the path forward that would be the magic pill as it is ‘backed up’ by medicine.

Unfortunately, in our particular case I am not convinced that it was the right path to go and we regrettably have decided to go with photon.